Launching the MS Blog

He slept beneath the moon He basked beneath the sun; He lived a life of going-to-do, And died with nothing done.
– James Albery

“Could do better.”

In what my children call the olden days, teachers would regularly use these three little words in school reports to describe the performance of their students. I know they were used to summarise my achievements on several occasions. Oh, the burden of unrealised potential.

These days, teachers can’t get away with this kind of glib dispatch. Now, reports must be a lot more detailed and show that the writer is not only familiar with their pupil but also knows the level they are working at and the steps needed to reach the next rung.

But these words can still be accurately applied to me. And especially in relation to this web site. After showing so much promise in its early days, the site has fallen silent for far too long and it’s all my fault. I could do better.

And I will do better and this blog is the place where that happens.

The idea is to write every week or so about a range of MS related issues – living with the disease, living with disability, living with other people’s views on disability, the politics of MS, new drugs and some of the other peculiar beasts that roam about in my head.

Beyond this, I’ll try to get the rest of the site back into shape. The news won’t come back in quite the way it was – the amount of effort involved precludes that. In fact, it was the sheer volume of work involved in collecting the news that so exhausted me and brought about this long hiatus. Nevertheless, I will try to summarise the major MS news stories – those that make the National Press – but I won’t go hunting about in local newspapers for smaller, more personal stories. Heart-warming is too back-breaking.

And yes, because it’s a blog, you the reader will have the opportunity to make your thoughts known provided you do it in a way that doesn’t cause offence to other readers. Disagree with me all you want but don’t call me names. Write on.

All that remains is for me to get the software working – so I’m off to bury my head in the workings of WordPress. If you’re reading this, it means I succeeded – if not, you won’t even know I tried.

17 comments on “Launching the MS Blog”

hello
found your MS website looking for info and read your story, but it doesn’t go beyond 2003. How is your health now between 2003-2011, perhaps MS was kind and left you alone….
Keep blogging!
Cheers!

I remember being dieongsad with MS..I too felt like my world had ended..But the truth is , it’s just begun !I am a 50Yr old F..I have had MS many years..I have been on betaseron for 8 years and I am thriving on it ! I still work full time and lead an active life with my Grand babiesMy best suggestions are to research the disease modifying drugs.They all have their own advantages and disadvantages.It’s up to you and your Neurologist to decide which is best for your needs and lifestyles.Eat right..Keep active ! I love yoga , it helps with tight muscles and balance issues.Watch your alcohol intake and just in general be good to yourself..I treat myself to a massage now and then.I wont fib to you..life with MS isn’t always easy,but for the most part..It’s really not that bad ! and on days when I am feeling down, I just remember the words of a very wise 3 yr old I know.. Pull up your big girl panties and get over it !A positive attitude will really make the difference Was this answer helpful?

Thank you for the website and new blog. I am hospitalized for the 5th time in 2 years with probable optic neuritis and a history of MS-like symptoms. No one has made an official diagnosis as there are no lesions in my brain but I have a long list of the classic symptoms and am hoping this adventure in diagnostics is successful. I don’t want to have MS but I need to know what “it” is and what we are going to do to get my amazing life back.
Thank you for the information, I have referred to this site hundreds of times and am relieved to find accurate information and peace of mind.
Jeana

My neurologist just told me he suspects I have MS. He can’t do an MRI because I have a pacemaker at the ripe old age of 46yrs old. Why is my body falling a part? He will do a spinal tap thursday and I know very little about MS. I’m on vacation this week and almost drowned in the ocean. My legs became noodles in the water and I could not get myself out of the water. I fell over and over again and 4 ppl had to help me get out. I could not even use my arms to get me flipped over and I’m a great swimmer. Scared me to death!! I will not get back in the ocean any time soon. Any info would be helpful.

There is no-one that can tell you how your MS will behave in the furtue, but a rule of thumb is that the first 5 years after your first attack will be an indicator of how the MS will affect you. Nothing is written in stone, though, aggressive MS can suddenly turn dormant and mild MS can suddenly become aggressive.The way I see it, we, who are diagnosed with remitting-relapsing MS, live with a sword over our head. We don’t know IF it’s going to fall and if it falls, we don’t know how severe the damage will be, but then again, there are no guarantees in life, and there is no point worrying about the what ifs .My advice to you is to read up as much as you can about MS. It helped me immensely after I was first diagnosed, because the average person’s knowledge about MS is usually based on worst case scenarios. These are what the media focus on, these are the most visible when you walk down the street.For your own sake, I feel it is important to come to terms with the worst case scenario, but it is equally important to realise that many of the MS statistics include old data that were harvested before the disease modifying drugs were developed. Today MS is not considered to have any effect on the sufferer’s lifespan, and many of people with MS lead normal or near normal lives, just 15% of all MS sufferers end up in wheel-chairs.Talk to your neurologist, don’t be afraid to ask questions, advice, anything at all. Many problems can be addressed with medicine, and if you have relapsing-remitting MS, the earlier you start treatment, the better. I started on Avonex right after I got my diagnosis and both the neurologist I’ve had, have independently of each other said that the early treatment is most likely the main reason why I’m doing this well.MS is not a death-sentence and it does not necessarily mean that your life will change significantly either. The most important part is to focus on what you can do. All depending on your symptoms, you might still be able to teach for many years to come.Take your time, try to relax and digest the diagnosis, do what feels right for you and try not to be too affected by well-meaning friends and family, if yours are anything like mine, they will be crying, treating you as if you have one foot in the grave, finding various articles on alternative treatments, and telling you about all the other MS cases they’ve heard of. Natural reactions, but not always helpful to the newly diagnosed.You might want to look into joining a MS group. I didn’t do so myself when I was first diagnosed, but I know it has helped many.All the best to you. Feel free to contact me if you have any questions or just need to talk. Was this answer helpful?

I have always come to this website when I needed info…I think you have done an amazing Job! I have had MS for 14 years but only recently has it reared its true ugly head. I wish you all the best and looking forward to the web updates

I found your website last night and while I have not had time to read it in depth , it spoke to me in language I can understand . I also am happy you are back at it , I was wondering what had happened.

My Man was diagnosed recently with MS – few symptoms at this point , however he is also 25 year type 1 diabetic , and bipolar , both of which do not “get along” with any treatment for MS – he is 46 years old!

So we are both scared , and looking for information – Much respect to you for all the hard work you did on your site- it helps people like me and my man very much.

Brightest Blessings to you , and all whose lives are affected by MS -Kat

Hello, I’m so happy to have found this blog…. Wondered from time to time what had happened to you and I am thrilled you’re back online and still out there giving out valuable information on MS….. Your website was a godsend for me when I was first diagnosed in 2006…and it is still an amazing site!!! Thank you so much, you will always be my first port of call when I need to know some more on MS…

Since ASMS went down the tube a few of us stay in touch through a private, member only Yahoo group. I’d love to get you on. Like Tick’s Place, which still floats around out there in the ether, we’re open 24/7 and the coffee is always hot.

It’s not sophisticated, mostly it’s friendly banter but I also have a clipping service to stay up to date with as many things MS as I can. I usually try to post a barrage of items about once or twice a week. It’s kind of a mini MS Cowboy thing.

Drop me a line bro, in case you haven’t heard we’ve lost a handful of loved ones to complications of this monster.

Hi there,
I found this website and have had it in my favourites for a few weeks. Came back to it tonight and have really appreciated the effort you’ve made to piece information together in a down to earth, and meaty way. I can really relate to it, thank you. Have gone through some anxiety the last few months, still waiting to have MRI to help determine diagnosis. It’s been a scary journey so far, I try not to focus on the negatives. I have found I appreciate my friends a lot more. Best wishes to all of you, Cheers

My husband has all the symptons just like everyone else, however his main complaint is his stomach fills tight and full all the time – he is a small man, and on the average we seem to have everything handled (but as you know, this changes day to day). Sometime he says it feels tight like a girdle – does anyone else have these complaints?? Any help would be appreciated!

A lot of us call this MS hug, Nancy. It’s just another symptom and is nothing more than an annoyance. There is no actual damage. That said, I have to lay my arm across my stomach every night to distract my brain from the feeling so I can go to sleep.

Live life to the fullest. My methor was diagnoised with multiple sclerosis when I was 8 but she had the progressive kind and was in a wheelchair after a very short period. She first shut out the world.( my dad died suddenly when I was 3 and she never remarried). She truly did not let anyone in our house for two years. We had people that we paid to keep the house up and go to the grocery etc and I took care of her, walked to school and would come back and take care of her for the rest of the day and throughout the night.After about two years of being mad at the world she finally accepted the disease and started letting people come visit and going to church. Her motto then was Don’t worry, be happy and It is better to laugh than to cry . She did not take her physical therapy for those two years and I truly believe that caused so much atrophy (muscle wasting) to her body. I know she was totally depressed but in the long run it hurt her. Again I say live life to the fullest.There are so many treatments out there now that weren’t available 30 years ago. Clay Walker has MS. Neil Cauvto from Fox News has MS. So many productive people have MS and live full lives. Just remember to pace yourself and listen to your body. When it tells you it needs rest then YOU REST. Keep stress to a MINIMUM. Stress can actually trigger an episode or take you out of remission. Try to find your local MS Chapter and talk to other people your age that have recently been diagnoised and those that have had the disease for awhile. They will all be very helpful. By the way do you have dark hair, blue eyes and med to fair skin. I don’t think there has ever been a study done but I have noticed that about 75 % of the people diagnoised have this in common. God bless you and your family. I will pray for you. Keep your head up. By the way she died of lung cancer,not from any complication of the MS. Was this answer helpful?

I have loved this site from age’s ago (I can not remember how long now) that’s the beloved “memory” issues I suffer with my MS. I find, if you can get anything positive from any site, it mean’s it’s a “Good” site. I thankyou for this very much. Tonight you helped me remember to live for today and not dwell into the unpredictable future of this horrible disease as I sit here feeling all down and blue. You cheered me up and although I feel in a very dark space right now, I will try my best to remember this quote for tomorrow. Thankyou again and may God bless you all. XXX

…..what an unexpected ‘enjoyable piece of literature’; I normally give up halfway (while looking at the little beam on the right side of my screen not going down quick enough..) but this time I had to read it till the end in one go!

Thank goodness it is not prieogssrve, but you will have to learn how to manage your life and when to say no. MS will stress your body and you can probably bet you will get fatigued neurologically and could have one good day and feel like trash the next day or so. Try to pace yourself in your activities and if fatigue becomes an issue you may have to find other activities that give you exercise but don’t over tax you. I only know MS is different with everybody else, you will need to find out what triggers some of the MS episodes that you have. Extreme weather of being too hot or too cold can be very taxing to MS patients, that is why a lot of them move to the NW like western Washington as the climate is cool in the winter and warm in the summer versus the extremes.I have a different neuro disorder similar to MS and I feel for you. Enjoy life and plan your life to ensure that you get the rest you need and when you start to tire, realize that is a sign that you have done too much and try to rest as soon as you can. By driving yourself to do more, you will only make things worse take it from me I drove myself literally into the ground.It may interfere with your work attendence that is why you need to stay healthy but rest. I don’t know how that will translate with your job, but your life has changed and it is nothing to be embarrassed about. Do what you can and when you can and have no guilt. MS is different on everybody, has different symptoms for each person depending upon the part of the body that is being attacked, so to speak. I hope you don’t get the fatique and learn what your short comings are and to use that knowledge as a framework for your life. There are physical therapy is some cases that help, medications although baclofen can be really raucus on your stomach is you are having spasticity.Take care and good luck, check the web sites and see what is out there for more information. There may be something that works for you. Was this answer helpful?